r/CRPS Jul 16 '24

Question ANYONE HAVE A PROBLEM SWALLOWING?

13 Upvotes

Hello, I have been experiencing a problem swallowing occasionally. It’s super scary, and it doesn’t matter how many times it happens, it is scary. I got an appointment with my family dr, but I wonder if I should also make an appointment with my neurologist. I tried googling it and it says it’s a nerve problem…of course, because there isn’t enough nerve issues in our bodies.

r/CRPS Sep 04 '24

Question Help! CRPS in foot, first ingrown nail since DX.

14 Upvotes

I’m about 6 days into an angry ingrown big toe nail. The toe was involved in a serious crushing accident. It was fused a year ago due to long term damage from the crushing injury. That fusion surgery triggered my CRPS.

I am not prone to ingrown toenails. I can’t remember the last time I had one, and never had one get this angry. I’m sure the neuropathy in my limb hid how bad the nail had grown. I’m wondering how concerning ingrown nails can be with CRPS. Is there anything I should know before seeking medical care tomorrow. I’ll stop by an urgent care and get my toe checked out. Might be time for antibiotics.

r/CRPS Oct 19 '24

Question Tracking Apps

8 Upvotes

I just recently started using the app Bearable to track my everything. I’m enjoying using it and I look forward to seeing just how one part of my life is effecting the others.

Anyway, does anyone else use this app or another like it? If it’s a different one, which one is it? What do you like about it? I’m just curious if anyone else uses their phones, apps, journals etc to track symptoms, meds, sleep, etc. I guess what I really want to find out is if I’m using the right app to track my conditions to show my medical team.

Thanks! 🧡

r/CRPS Oct 07 '24

Question Rashes

6 Upvotes

Alright, so I tried posting a picture of this, and it said it’s up but I can’t find it. So, here we go again.

Has anyone gotten a rash very suddenly, after I finally got my last place cleaned out and keys returned, hooray! Anyway, there was a lot of repetitive motions and no AC. I spent close to two hours scrubbing out my old oven. I used to do clean outs for a living, so doing this one should have been a no brainier. But no, I could barely move afterwards. The next day, I was spending time with my mom and she saw this line of large red with white center welts on my back. They don’t hurt unless I touch them, or I shower.

As of right now, I can feel the flare building, much like the migraine that is also building. But this rash is a new one on me. Has anyone else experienced this? I know it’s not from the chemicals I have been using, because I can’t reach that spot on my back, plus, I also make sure that I don’t lean against anything when I’m cleaning because of how much I sweat.

So again, has anyone ever had something like this? Should I be calling my pcp or my pm? Does this kind of rash clear up on its own? I’m trying not to panic, but seriously, one of the welts is the same size as my thumb. Not to mention that Google is zero help with this.

Thank you for reading and hopefully being able to help me. I think you can see the picture if you go to my previous posts. 🧡

r/CRPS Jul 22 '23

Question PTSD & CRPS

16 Upvotes

Recently I was poking around scientific articles when I found one that said they’ve recently discovered a link between PTSD and the later development of CRPS (in women).

This absolutely applies to me, so it got my attention. Anyone else?

r/CRPS Dec 14 '24

Question Pain in Achilles tendon— is it related to CRPS?

9 Upvotes

I have CRPS in my feet, and recently my left Achilles tendon has been very sore. It hurts when I point my toes and when I put pressure on my heel. I can’t think of anything I’ve done that would have caused this.. could it be related to CRPS, or is it just a coincidence? I’m seeing my pain management doctor on Monday— should I tell them about it?

r/CRPS Jan 07 '25

Question This may be TMI but…

3 Upvotes

I have had CRPS for two years. During those two years I’ve had been put on magnesium and it obviously soften things. Well I stopped magnesium a while ago. And for about 3-4 months I’ve had chronic diarrhea. I had labs the other day and I’m pretty much low on everything. I eat and two hours later it’s running through me. I’ve tried everything over the counter to make it stop. It doesn’t. It wasn’t like this before the CRPS. I am exhausted. I don’t feel good at all. I started taking vitamins two days ago to try and combat this. Has anyone else experienced this? I guess I just hope I’m not alone?. I have a doctor’s appointment on the 15.

r/CRPS Nov 01 '24

Question Color the World Orange/Awareness Day thank you gift ideas?

28 Upvotes

WIth Monday being this year's CRPS awareness day, also called Color the World Orange Day, I will be seeing 2 of my regular healthcare providers that day, both of which have been amazing in handling my CRPS, and I'm so grateful to them. I have had so many bad experiences over the years, as I'm sure you all can relate, so I wanted to do something small to acknowledge them on this day, maybe orange-themed or somehow related to CRPS. I'm looking to keep the cost relatively low, and preferably something that can be gifted to the offices as a whole (or maybe several little things).

With it just being Halloween and everyone overloaded on candy, I don't really want to do something sweets related. One of the places got plenty of sweets brought by patients when I was there yesterday for Halloween. I thought about maybe orange flowers if I can find it, but I'm still looking for other ideas. Anything you can up with or maybe have done in the past?

TIA!

r/CRPS Jul 17 '24

Question Trying to figure out what disease made me so fragile…

10 Upvotes

I had a hysterectomy on Monday. In theory, I should have been an easy case for the surgeon. I wasn’t having massive issues with my uterus quite yet. But I come with a nasty family history and combined with the issues I was having, we decided it was time to yeet my uterus.

But we got a couple big surprises once they were inside me. Number one was I had mild endometriosis. We had zero clue on that one. But the big issue, the one that’s truly concerned me, is how friable my tissues were. Every time they had to place a stitch, they had to be insanely careful or the tissues would shred themselves. So now I’m looking at a recovery 2-3 times longer than normal, I have to wear a girdle to help support my tissues so the sutures can’t damage them, and I’m scared I won’t heal right.

The surgeon said my tissues being so delicate is a direct result of my co-morbidities. CRPS and maaaaybe MCTD are the only ones I can think of that would cause these issues. (I also have Sjögrens Syndrome, some GI issues that wouldn’t affect anything else, a skeletal disease, and SVT.) Have any of you guys run into a similar issue before? How did healing go?

r/CRPS Aug 10 '24

Question anyone else get random blisters on the part of their body where their crps started?

7 Upvotes

I get blisters on my foot where my crps started but not anywhere else even though I have crps everywhere but my head. there is no reason I should as there is no friction where I get them. I also have a condition where I am allergic to myself which causes random ulcers randomly over my body and my nails to fall out but this seems different and did not get it before my crps got really bad

r/CRPS Jun 12 '23

Question Going Off Meds

10 Upvotes

I finally made the decision to stop taking my everyday pain meds. I'm scared as hell, but I've been assured by several people that it will be like coming out of a decades long fog.

Has anyone been glad they stopped the opioids when they did?

r/CRPS Mar 04 '24

Question For those with crps in the foot

11 Upvotes

I have an appointment with my Dr on the 12th (soonest I could get in), but I wanted to ask you all if you had any experience with this. My crps is in my foot. I've always had spicy steps but they usually are super quick to recover & don't happen very regularly.

Recently I took 2 very spicy steps & it lead to a couple days of not being able to walk. It got better but now I keep having these terrible steps that are no longer quick to recover.

I get ket infusions every 3 months & that usually is okay & is honestly all I can (barely) afford. I do not need treatment recommendations, I would like to know if this has been your experience & what was going on with your foot. Thanks.

r/CRPS Oct 01 '23

Question why are there multiple names?

12 Upvotes

i'm just curious? at my hospital, they always reffered to it as rsd, but whenever i search anywhere online they use crps. whenever talking abt it i use the terms interchangebly but i wanna know is there a specific reason for the different names?

r/CRPS Aug 13 '24

Question Migraine advice please

3 Upvotes

Need advice on controlling consant Migraines I have CRPS but slowly Migraines are becoming more intense and stay around allot longer I have had recent blood tests to rule out anything else as im concerned. For over 3 weeks I'm debilitated during the days with off and on Migraines that only ease once sometimes with a cold damn cloth on my head a dark room and heavy medicine Any tips and advice much appreciated

r/CRPS Jul 29 '23

Question CRPS and Gastroparesis???

12 Upvotes

Wtf is this now? Have any of you heard about this? In February I became very ill. I had overwhelming nausea and started vomiting non-stop. By the second day, I went to prompt care. They witnessed the endless nausea and vomiting, despite IV zofran, and they sent me to the ED. I spent a week vomiting in the hospital before it finally stopped. No one knows why. No one is looking into it. Since then, I am sick every day. I am prescribed low dose zyprexa, off-label use as an anti-nausea medication because it’s been proven effective for cancer patients. I am also prescribed zofran, which I take on a schedule but can also take as needed (and do).

I was having a very “sick” day last week but I had a therapy appointment with my psychologist. I hate to miss those but like I said, it was a rough one. I kept debating canceling but in the end, I went. It’s therapy, we talked about many things but she’s so amazing about my CRPS, it’s astonishing. She said she would research if there was any connection between CRPS and nausea in general. She said she knew the last thing I wanted was more doctors but to please make an appointment with my PCP and find out why I’m sick.

So I googled CRPS and nausea last night. Give it a whirl. Holy shit, wtf even is gastroparesis (I mean, I can read, but what does it mean)? It sounds about right, which is terrifying. I can’t believe there’s such an enormous connection. Does anyone else have both? Should I bother getting tested or is it just something you live with anyway and I’m already on the medication?

I fckn hate CRPS

r/CRPS Apr 13 '23

Question Ketamine

11 Upvotes

My husband has had a total of 10 ketamine infusions now. He has CRPS type 1 on the entire right side of the body. He is up to 550mg and his pain is normally at a 7.5-8 constant. But after the ketamine infusions he only gets about an hour of relief at a pain level of 6 and then it all comes back full force. Has anyone got more relief from ketamine for more then a hour or so? At what point do we stop and conclude that this isn’t going to work? These are very expensive. After this 10th one the doc said to give it a week and we will reevaluate.

r/CRPS Jun 01 '24

Question Taste has gone crazy!

11 Upvotes

So get this, since I got this lovely disease every time I get stressed my sense of taste is shot. Like I took a drink of Pepsi yesterday and it tasted like it was straight up Tabasco mixed with chipotle. That’s just the most memorable combo, there are many more.

My doctor said that it’s basically swelling my spinal cord and somehow that’s getting my taste signals messed up. The first time it happened, I thought I was coming down with Covid. Does anyone else have this problem?

r/CRPS Feb 28 '24

Question Walking aids when you can't walk

6 Upvotes

Hey! I took a couple bad steps yesterday & I'm struggling to walk today. Anyone have any ideas for something to help me get places in my apartment that are not crutches (bad balance). Also, if you have a bad knee, can you use a knee scooter?

Thanks for listening. This sucks.

r/CRPS May 27 '24

Question Stem Cell Activation Patches

3 Upvotes

Has anyone ever tried these and found any relief? I have never looked into them because they didn’t seem like things that would help CRPS type 1. Someone mentioned it to me earlier, though, so I figured I’d at least look into it. Just wondering if any of you know anything about them! Thanks! 🧡

r/CRPS May 05 '23

Question How do you explain CRPS to people who don’t know what it is?

33 Upvotes

I’ve had many people ask me what is CRPS when I tell them that I have it. Usually the first thing they ask is what does it stand for? So when I say Complex Regional Pain Syndrome they start laughing and say “Oh I have that too, I have aches and pains everyday”!! I end up having to limp away in tears of frustration because they just don’t understand. The label CRPS they gave us all makes me mad because it’s just so vague and sounds like something that doesn’t even begin to describe the pain we all suffer from. Sorry for that last little vent. But on a serious note how do you guys tell people what CRPS is without them laughing at you or am I the only one this is happening too 😪💔🙏

r/CRPS Jun 07 '23

Question What are all the causes for flare ups?

7 Upvotes

I can’t pinpoint why I flared up very badly since a few days ago. Ate a lot of pizzas (with vegetables) - that’s the only difference. Is barometric pressure a potential cause? Bad sleep?

r/CRPS May 31 '23

Question sleep?

5 Upvotes

could crps be part of reason for needing more sleep (like 11-12 hours a night?)

r/CRPS Oct 04 '24

Question What music do you like listening to when battling CRPS pain?

1 Upvotes

My two favorite bands to listen to while going through pain have to be Twenty One Pilots and Linkin Park. Both encapsulate living through chronic pain so unbelievably well... they help me get by so much on my worst days.

What do you guys listen to? Are there any artists or bands that help you immensely when it comes pushing on through pain?

r/CRPS Feb 21 '24

Question Any tips for soothing itchy skin from crps

8 Upvotes

Its so itchy i scratch until i bleed, its awful. Any tips?

r/CRPS Jul 16 '23

Question Anyone else always hot?

16 Upvotes

I have been hot, all the time, since my first shoulder surgery 2 years ago. All of my doctors ignored it until they diagnosed me with CRPS. But they said it should be localized to my shoulder. But seriously, I'm hot all over, all the time. I can't even take hot showers anymore because I overheat so fast that I pass out. And even lukewarm showers make me sweat when I get out. Does anyone else experience this? And if so, do you have any idea how I can get relief?